It's a BLOG Captain, but not as we know it.

As I write this it’s been less than a week since Virginia’s funeral. I’ve spent the week at work, mainly because I needed to get back and spending the time at home in an empty house does no one any good. In that time frame I have worked on putting Virginia’s affairs in order; paying bills, getting the death certificate, and dealing with the estate.

I have been accused of being responsible for her death, that my lack of attention and “caustic enviroment” caused her to pass so quickly. I have been accused of whining over her death “Too #%@&-ing much”. I’ve also been accused of using her death for personal financial gain.

To the first, I respond that the move to Holland was not a popular one with my immediate family. Virginia and I agreed at the time that it seemed like the right thing to do but were troubled over why we had to do it. Virginia, the family and I shared frustration over the circumstances of our situation, however never once did she accuse me of “Lording it over” the family. In her last week of life, Virginia came to the conclusion that one of God’s reasons for having us in Holland close to my family was for the support that I’d need after she passed.

To the second, when you’ve lost your spouse of 22 years then you can tell me if I’ve been whining too much.

To the third, I never asked for the Vulcan Stev solidarity fund. That was started by the RPG community completely of their own volition. The news paper added the line to her obituary about memorials can be directed to the family, that was not my doing. Am I thankful for the funds that have poured in? Yes! Are times going to be tough for me and the boys? Yes, we lost half of the family income. But I have asked for only one specific thing for financial help and that was after the specific request of the individual over what immediate financial help was needed. Aside from that I have NOT asked for money.

Money can not and will not replace what I’ve lost. Most of my tears have been in private. If there’s one recurring phrase I’ve been hearing from everyone else it is how much my wife and I truly loved each other…

The picture posted with this blog comes from one of my Facebook friends. Virginia lost a breast to the cancer. Did I stop loving her? no. I married Virginia not her boobs. Virginia lost her hair due to the radiation treatments. Did I stop loving her when her crowning glory vanished? no. I shaved my own head in solidarity. I loved and still love the person, not the shell that housed her.

When we received the diagnosis that Virginia had in fact developed breast cancer we were shocked but yet relieved. Breast cancer was “curable”. We were going to beat this. Looking back at the year and a half since that diagnosis it is more obvious to me now that the cancer was taking its toll on her body. She was tiring out more frequently. Things that had once been easy were no longer.

The thing is now that I know more about breast cancer, I realize now that my wife was at a higher risk. Back in the 80s Virginia’s doctor put her on birth control to help regulate a hormonal imbalance. She took those tablets right up until the time we started actively trying for a family. From what I’m reading the cancer that killed Virginia had been estrogen fed. Did those birth control pills contribute to Virginia’s cancer?

Virginia had always wanted to breast-feed her children. We determined early on when Janae was a baby that her left breast had some sort of defect the precluded milk production. Was this defect a cause of the cancer? We don’t know. It is my hope that whatever scientists and doctors are working on developing a cure for cancer will take these facts into consideration. Do not let my wife’s death be in vain.

It is my firm hope and daily prayer, that I am the last husband to lose his wife. My children the last to lose their mother. Mom and Dad Young the last parents to lose a daughter.

Once the bills have been payed and the children provided for, we will be taking a portion of Virginia’s life insurance and starting a fund for cancer awareness.

Don’t let cancer steal second base…. or anything else for that matter.

Virginia left the UIHC at 12:00 noon on Tuesday. It was exactly on week ago from that moment that I picked her up in Waterloo for a three-week check-up regarding her chemo pills. The slippery slope has been chronicled here on this blog. I’m not going to rehash the whole week right now. I will state that her prognosis has deteriorated rapidly. We went from “These labs are a little out of whack” to “Steve I am so sorry” in the course of seven days.

The deterioration has been on a seemingly exponential slide. We’ve gone from months, to weeks, to days and now hours in the space of 48 hours.

I’m sitting here in the corner writing this and talking with a couple of friends. Virginia is currently running a temp of 104 breathing about once every 6-8 seconds and her lungs are rapidly filling with fluid.

She has been unresponsive since breakfast this morning. I’m going to sit with her until the time comes.

Her journey is almost over. I have found this series of articles to be a catharsis. I do not enjoy sharing all this “bad” information but it helps me deal with the emotional upheaval. It also serves as on stop clearing house for “How is Virginia doing.

I’ll let everyone know how things continue. I appreciate all that has been said, re-posted, tweeted, blog, and IM’ed.

It is 11:20 in the morning Tuesday May 11. I am sitting in the chair that I have basically occupied for the past 48 hours. Yesterday Virginia’s dietary intake went from solids that she couldn’t eat on her own, to fluids, to liquid, to nothing as of this morning.

Her last (as of now) spoken sentence was to the boys last night. She told them goodnight as I held the phone to her ear. Sometime between that phone call and 6:00 am, Verizon decided to shut down our phone service. I’ll admit that I had promised to get them some money last week, but God forbid that I be given any slack because I’ve sitting in the hospital.

/begin rant/ I couldn’t call anybody this morning. My daughter was en route from Colorado without a phone. I couldn’t call the boys this morning so they could tell Mommy good morning. I couldn’t call Virginia’s family to let them know to get here sooner rather than later. I spent three hours jumping through Verizon’s hoops before I actually got to talk to a real live person. (No I don’t have my blasted account info handy. I wasn’t expecting to be in Iowa City for 72 hours straight.) Verizon compassionately informed me that for only $15 per line they would have my cell phone service reconnected in about an hour. *sigh* /end rant/

I’ve called her family. I’ve called my family. Pvt Black Spartan is on her way and should be here about 8:30.

Virginia is not eating. She is sleeping most of the time and will occasionally open her eyes. Her breathing is somewhat labored but not the “Death Rasp”. I asked the doctor about an IV for nutrition. Imagine my surprise when I was told that food and water is counter-productive at this point. Apparently the body works harder to process the intake and hastens the body’s demise.

We’re waiting on the ambulance to take her Hospice care at the home where my sister works. It’s in the same community where I work and is only 10 miles south of the house (as the crow flies, call it a fifteen mile trip). I’m on FB when I’m in the room (until the ambulance picks her up). I don’t know what kind of coverage I’ll have at Hospice.

I appreciate all the kind words, prayers, buddy pokes, IMs, phone calls, text messages…. My eyes are currently dry but only because I’m cried out. I’ll close off this update with the lyrics to a song that has been constantly running through my head these past three days.

O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made;
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art!

When through the woods, and forest glades I wander,
And hear the birds sing sweetly in the trees.
When I look down, from lofty mountain grandeur
And see the brook, and feel the gentle breeze.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art!

And when I think, that God, His Son not sparing;
Sent Him to die, I scarce can take it in;
That on the Cross, my burden gladly bearing,
He bled and died to take away my sin.

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art!

When Christ shall come, with shout of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration,
And then proclaim: “My God, how great Thou art!”

Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Saviour God, to Thee,
How great Thou art, How great Thou art!

This is an update of what I know as of right now. Yesterday J.V. (Virginia’s best friend in the whole world) came and sat with Gin most of the day. She reported to me that Virginia was sleeping most of the time. She was concerned about the difference she saw in Virginia in just a week.

I got to the hospital this morning. I was encouraged by the difference I saw in her from Thursday night to Friday night to this morning. Her speech has improved and she’s not slurring her words. She is sleeping more but given her condition that’s to be expected…

That’s when Dr. R. hit me with the news. According to Dr. R. the cancer is VERY aggressive and is overwhelming the liver at an accelerated rate. This is what caused the apparent drug overdose, the liver is not processing the medication as it should. The swelling of the liver is what is causing Gin the pain.

Dr. R. is currently suggesting taking Virginia off the chemo because it is now doing the body more harm than good. Dr. R. is no longer recommending the SIRS-Spheres. What she is recommending is hospice and keeping her comfortable. My Grandparents entered hospice in their last months of life. I’m not stupid, “keeping her comfortable” is doctor-speak for “There’s nothing else we can do, death is coming.”

Hospice is coming to talk with us this afternoon. More info as it becomes available.

added: 5/9/10 6:00 pm CDT
Hospice has been by. Dr. B. has informed us that we are looking at 2 weeks to 2 months. The cancer is VERY aggressive. Virginia basically has a tumor where the liver is supposed to be. I’m spending the night with Virginia at UIHC. PIT #2 is watching his brother at home. Pvt Black -Spartan has been put on Red Cross alert.

Virginia is sleeping more often than not. Her speech is slow and slurred but it is an improvement over Friday. They aren’t watching her vitals anymore. They are keeping her comfortable and will be looking to put her into hospice nearer to the family.

I am not handling the news well. I’ve been in tears most of the afternoon. This is my wife we’re talking about. I’m trying to be clinical about but I’m choking up as I write this. I’m afraid that this series of articles will be ending sooner rather than later. The thing is I believe that I will see her again some day. That does not change the fact that I’m hurting like H*ll. I don’t want to think about losing my wife of 23 years. I don’t want to think about raising two boys alone.

Tuesday May 4, Virginia and I both took off early from work to transport her to Iowa City. We had the three-week follow-up after her first round of Xelota, a chemo pill. The appointment was scheduled for 2:30. We arrived at 2:00 pm and Virginia was taken to the lab area for some blood work.

We waited until almost 3:00 before we were called back to talk with Dr. R. Almost as soon as she entered the exam room she expressed concern over Virginia’s fluctuating temperatures and uneven white cell blood count. Dr. R. wonders if Virginia has an infection of some sort. The cause for concern is that if ‘Gin starts the next round of Xelota, her body’s immune system will be compromised and unable to fight off the infection. Dr. R. admitted Virginia yesterday afternoon to run some tests. She wants to determine the cause of the fluctuating temp and white blood cell count before starting the next round of chemo.

This caught us completely by surprise. We were expecting to be heading home no later than 5:00. Suddenly we’re scrambling to make contingency plans to get the kids fed, cars picked up, work called, relatives notified…. I finally left UIHC at about 6:30 and after retrieving the T-Bird made it home about 10:00 pm.

Yesterday after I left, the doctors ran a chest x-ray, conducted lots of blood work and took an MRI of Gin’s head. Right now we are waiting on an ultrasound of the liver. Last word was that the white blood cell count was high, protein levels were low, and sodium levels are low.

Dr. R. and Dr. H.(the resident) just stepped in. The MRI preliminary result came back clear. The chest x-ray came back clear. Dr. R. is thinking that depending on the results of the liver ultrasound, we should be able to head home today.

We’re upping the dose of the Xelota and Dr. R. thinks Gin should be able to finish off the school year.

Yesterday, Virginia went to a see Naturopath. She spent two hours with the doctor while he poked and prodded and asked her questions. I’m getting this all second-hand as I was not there during the visit, my sister Allison went with her instead.

Anyway, after much poking and prodding and discussing, the doctor informed Virginia that he thought he could have her completely free from cancer in 120 days. That is of course if she follows a VERY restrictive diet. I read over the list of DO NOTs. It looks like our normal shopping list.

I’ll admit to being just a tad skeptical about the claim. If the doctor can do what he says, then why are so many Americans dying from cancer. The doctor’s response to this is most Americans don’t want to eat healthy also health insurance does not cover preventive care. Also the pharmaceutical industry cannot copyright and trademark natural food.

The implicit accusation is that the American food industry could care less what you eat as long as it’s stuff they’ve processed to heck and back. The health/pharmaceutical industry doesn’t care what you eat as long as it makes you sick and sends you to them for treatment.

Virginia, had already been eating healthier before the appointment. I’ve noticed more energy and stamina on her part. So perhaps there’s something to the doctor’s claims. Only time will tell.

We’ve got the normal appointment scheduled for Tuesday. I’ll let Virginia add her two cents in the comments as she feels up to it.

Today we got the results of the most recent urinalysis and a liver function test.

The urinalysis is showing traces of blood in the urine. The liver function test shows two functions up and one function down (whatever the heck that means). The alkaline level in Gin’s test is on the rise. According to my sister the nursed that is good news.

Again all we got today was the most recent urinalysis and liver function tests. According to Gin, the nurse who read the results to her did not seem overly pleased with the information. They wanted to schedule an appointment to see the doctor this week. It was determined that we could wait until Tuesday’s Iowa City appointment.

According to my sister the nurse, the results are a positive indication that the health food diet is working.

Virginia’s stamina is slowly declining. Her mental outlook seems to depend a lot on her energy level.

I’m sorry I didn’t get this posted yesterday, but we had friends stop by to help us with some house cleaning. It’s kind of difficult to sit on one’s butt whilst others are cleaning your house.

We got the results of the X-Ray and the urinalysis. Both came back clear. This means that there is no infection causing her temperature spikes. According to what I’ve been able to piece together by what Dr. S. is NOT saying this is not a good thing. It means to sole cause of Virginia’s temp spikes is the cancer-infested liver.

As long as the spikes do not go above 100.4 we’re stuck until the next appointment for some answers.

Next Doctor appointments: April 30 – Naturopath, May 4 – Dr. R in Iowa City

Honestly, I was going to post this last night. Not being at home for most of the day followed by an uncooperative ‘net connection kept me from posting last night. I’m writing this Thursday morning before work (when I should probably still be in bed) because I can’t sleep.

Yesterday, we had a follow-up with Virginia’s original Oncologist. He was, as usual, late to the appointment and he also stepped out of the exam room many times during. Had I not had my new copy of Final Crisis (yes I broke down and got the hard cover) I would have been very bored.

I noticed two things yesterday. First, Doc S. was more evasive than normal. Direct questions were answered by pointing to meaningless numbers on a computer screen. Second, he seemed to be over-selling himself and constantly reminding us the HE was the oncologist and only recommended we go to Iowa City so that we could bask in warmth of the fact that HIS diagnosis was the correct one. At least that’s how the whole appointment seemed to run in my opinion.

Doc S. asked Gin some questions about her high temps (running in the high 90s with spikes just over 100). He asked her questions about other bodily functions. Throughout the question process he kept turning away from Gin and I and referred back to his notes on the computer behind him. I bluntly asked him what his concern was. He finally admitted that he was worried what was causing the elevated temperatures (we had only been told before to be concerned if the temps went above 100.4). Doc S. then ordered a urinalysis and an x-ray. He explained that he wanted to make sure that Virginia’s temp was not caused by a sickness. We went immediately across the street to get the tests completed.

After we returned home, we went over to my folks for supper. We got the usual concerned family grilling about what’s going on. As Doc S. had not given us any straight answers, I had none to give my family. We came home about 7:30 last night and Gin went straight to bed. She’s been up several times during the night and is currently (6:30 am) sleeping.

I’ve been thinking a lot about the visit yesterday. Doc S. was very concerned over the temp. He wants to make sure the elevated levels are because Virginia is fighting an illness. OK so then if it’s not an illness what is it? Doctors are NEVER concerned over nothing. However, Doc isn’t filling us in on his thinking. He also mentioned repeatedly in very assuring tones that he’s trying to find a treatment that works for Virginia. Does that mean this treatment isn’t working? Is my wife failing faster than he thought?

The other thing that concerned me was the over-whelming bend-over-the-back efforts to keep us at HIS practice. Every idea or treatment that the University doctor thought of was dismissed out-of-hand or glossed over. I got the distinct impression that Doc S. was more concerned over keeping Virginia as a patient than he was concerned over making her better.

The last two paragraphs are entirely my own thoughts and speculations on yesterday. As Virginia went straight to bed when we got home, I have not had the chance to talk to her about any of this. I don’t know if she had the same impression or not.

Basically, we were originally told not to worry unless her temp went over 100.4. We were sent to the ER when it went to 100.6. Doc S. was concerned about the treatment the ER doc prescribed ‘Why did he prescribe those meds?’. Now he’s concerned about a constant temp in the high 90s.

All this doctor concern with no satisfactory explanation given has left me scared.

Good morning! Given the somewhat worrying Tweet I posted last night, I thought it would be a good idea to give everyone a short update. Virginia was taken to ER last night at 10:00 pm with a temperature above what the Iowa City doctors considered safe. The hot-line was called and the decision was made to send Virginia to the emergency room.

After all the tests, lab work and associated hospital stuff, it was determined that Virginia was battling a slight infection. Given that the cancer is in her liver it is better to stay ahead of these things. At approximately 11:30 p.m. the decision was made to give her an anti-biotic that does not interfere with the chemo pills.

She is at work today. However the pain and fatigue are beginning to overwhelm her. Thoughts, prayers, good vibes, everything is appreciated at this point.